Wednesday, 10 July 2013

Wed 10 th July 2013 - a mixed bag

Well after my last blogg Harry had a fabulous day last Wednesday, non stop from 7am till 7 on. However, for each good day we then have a bad one!
Really Harry has been very intermittent with vomiting (side effect from the radiotherapy) and on Sunday he spiked a temperature of 40 degrees C, he couldn't wee, was very lethargic, sleeping all day, could hardly focus his eyes and frequently vomiting. I rang the oncall McMillan nurse who suggested we got Harry to ward 31. However I requested to go to Martin house instead. There was a bed and we headed there for mid afternoon. Callum went to a friends house as he had an important birthday party to attend!
Martin house assessed Harry and it wasn't clear if they would be able to meet his needs if intravenous antibiotics were to be needed, but they were happy to keep him for assessment overnight. The on call community nurse was able to visit Harry at Martin house and fit his wiggly into his port to access it for his bloods. He had blood cultures taken to be tested to see if Harry has an infection, he had his bloods taken too, to see what the scores on the doors were. Harry was also able to be administered intravenous anti sickness medication as he couldn't keep the oral medication down.
Having had a very worrying Sunday, Harry then awoke Monday very bright and alert!
Being in Martin house was definately the right place to be as, as soon as Harry heard that there were animals from 'Mary's farm' visiting he couldn't wait to get up! Such a difference to the hospital setting whereby Harry would have been isolated to one room, he would have taken on that patient role and I am certain he would not have had the good day he did on Monday.
You see being in Martin house means the whole family and friends can be included. On Monday afternoon Kate brought Fin and Callum to visit. Being such nice weather, the paddling pool was out and all 3 boys donned their swimming costumes and were able to play is if they were at home. Daddy visited too as did harry's friend James and his mummy And they stayed for tea.
Harry's blood results indicated that his platelets have dipped a bit as has his Haemoglobin. It was decided that Harry would benefit from a blood transfusion, so this was set up for Tuesday at LGI. It is probably the radiotherapy that has affected his blood scores, but equally it could be cancer cells lurking in his bone marrow. A few weeks wait will indicate which.
Since Harry had, had a fab day Monday we decided to return home after LGI On Tues.
However, being at home wasn't the reunion we had hoped. Harry was incredibly tired tues afternoon. He fell asleep in the hospital and on the way home. Once home he refused to go to bed. However, sat In The dining room with his eyes frequently closing and when they weren't he was in quite a state, nobody could do anything right for him. It is horrible to witness and it is at these times when I know its the medication giving Harry a temporary personality transplant, but equally hard to tolerate and bare. We have more medication prescribed to try and take the edge off Harry when like this, so having discussed yesterday that perhaps I should start administering this, I did so. Harry calmed down for a short while, but was then too sleepy to eat tea. He also vomited again. Along with recent diarrhoea, Harry has lost nearly half a stone in weight.
I found out yesterday that the one shot of radiotherapy that he had, was quite a strong dose. I didn't know this. Therefore it is not surprising he is still experiencing the side effects. He does seem to react badly to radiotherapy.
His mobility you will be pleased to know is so much better and pain is currently minimal, we just need these side effects to pass and god I hope we have some good days.
The sun is shining, but for us it is not.
Harry's consultant did say that he could have more radiotherapy on his spine when that hotspot of cancer is bothering him. However, we need to get him back on track after the last lot of radiotherapy. Harry's not a car that can continually be fixed. I am ever mindful of treatment versus side effects.
Today Harry has been a bit zombified due to this new medication. It's a fine line between over medicating him and dealing with him being agitated. We are to try this new medication for a few days and see how Harry fares.
He did brighten up towards the latter end of today, when a friend from Scotland visited. When Harry is in this 'zomby' state he struggles to take information in. School is out and I guess we find it hard having him at home all day with respite still very minimal.
Really we are struggling with our own emotions very much at present, therefore we are really delving into our inner selves to gain the strength to manage Harry too. Callum just manages to get a look in too! Since Harry goes to sleep very quickly I like to to take the chance to spend time with Callum at bedtime. Our special story time. Callum is growing up so fast we are nearly missing his rapid development. Nursery is such a brilliant place for Callum to be 3 days a week. He is so settled there and they are like one big family, thus giving Callum that security he needs all round at present, cos this is hard for him too.
Martin house provides us with a safe haven, where we feel supported and protected. Whilst there I feel like we can manage, but once home I am not so sure. Our situation reminds me of the many older people I have assessed who have had emergency stays in care homes and want to stay their permanently, but need the necessary funding to do so. Via being in care, the care needs of a person can appear minimal as it is the actual fact of being in a supported setting that meets that persons needs. Therefore to assess there, the person appears to manage. Remove that setting and assess in the person's own home all the cracks and difficulties emerge very quickly.
I feel that is us!
However, we will see what tomorrow brings. I wake up on edge each day wondering if its a good or bad day. Please let it be a good day tomorrow as the sun is gonna shine, please let it shine within us all too!

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